My aim is to complete 8 half marathons in 8 weeks in order to raise money and awareness for LAM Action who undertake medical research and provide support to sufferers of Lymphangioleiomyomatosis, a rare disease that my beautiful fiancé Leanne has been diagnosed with aged 29.

The list of events are as follows, along with an introduction to LAM which I would urge you to read and consider.

WHAT IS LAM (lymphangioleiomyomatosis)?

LAM is a rare disease that affects young women – around 1 woman in 400,000.

LAM affects the lungs causing smooth muscle cells to proliferate. The cells gradually block the airways (breathing tubes), blood vessels and the lymph vessels that drain excess fluid from the lungs. They produce cysts in the lung and fluid around the lung. Patients may also have benign kidney tumours which can bleed.

 

WHAT HAPPENS TO PATIENTS WITH LAM?

 

Women with LAM become gradually more breathless and they may cough up blood or lymph. Most suffer from a collapsed lungs and lymph may collect around the lungs. Oestrogen hormones and pregnancy may cause LAM to progress more rapidly. In most cases LAM leads to respiratory failure, dependence on oxygen and death or lung transplant in 10 to 15 years.

 

WHAT TREATMENT IS AVAILABLE?

 

There is no really effective treatment at present. Various treatments have been tried, particularly a hormone called progesterone and drugs to reduce the body’s natural oestrogen. These treatments may help some patients a little but they don’t suit all patients and can have side effects.

LAM ACTION

 

LAM Action was set up in the UK in 1997 following a meeting of 21 patients with LAM in Nottingham. It provides support for new patients and raises money for research. It is supported medically by the respiratory group in Nottingham, led by Professor Simon Johnson, who are carrying out research into LAM.

FINANCE

 

LAM Action has raised an average of £65,000 over the last three years. Most fundraising comes from initiatives from individual patients and supporters through events such as the London Marathon. We have also obtained grants for LAM research from the LAM Foundation, British Lung Foundation and Nottingham University.

WHY DO WE NEED TO RAISE MONEY ?

There are three good reasons:

1. to pursue basic research to find the cause of LAM

 

2. to carry out research to see which treatment is best, and follow through with treatment trial

 

3. to provide better support for patients with LAM

HOW WILL THE MONEY BE SPENT?

 

The aim of LAM Action is to obtain at least £70,000 p.a. for the next 3 years to continue supporting a full time post-doctoral scientist and consumables to continue basic laboratory research.

 

The clinical trials of Doxycycline continue and other potential treatments are in the pipeline. This work compliments and augments similar work being done in the United States and Europe. There is much potential here, but funding is required to enable us to keep the trials going and allow LAM patients to benefit from the work.

 

More money would also enable us to provide greater administrative support to LAM Action and thereby to patients with LAM.

 

Money for research will be pursued from grant-giving bodies, but it isn’t easy to raise money for rare diseases. Having additional monies enables the research to proceed more rapidly, funds pump-priming experiments and provides administrative support to help LAM Action and research.

LAM - a Personal Story

I’m delighted to hear that you will be running 8 half marathons in 8 weeks to raise funds for LAM Action – thank you very much indeed! I thought you might find it interesting to hear my own experience with LAM, to give you a better idea of what and whom you’re running for.

I was diagnosed with LAM in 1991, when I was 27. In the early years, it did not affect me and I remained very fit and active, but as time went on my condition worsened and I became increasingly breathless. This had a huge impact on the lives of me and my husband. One by one, we had to give up our favourite activities – travelling, tennis, golf, going out for dinner. By autumn 2003, I was on oxygen 24 hours a day and everything was an effort – talking, eating, dressing, sleeping. Even simple things like walking from the front door to the car or making a cup of tea were extremely difficult because of my lack of breath. I’m naturally an energetic and sociable person, but was unable to be either. Not only was it frustrating to be so restricted, I was deteriorating so rapidly that it was very frightening.

However, in February 2004, I had a single lung transplant. Thanks to the donor, their family and the wonderful team at the Freeman Hospital in Newcastle, my life since then has been absolutely transformed.

The months immediately after the operation were quite tough, but I was amazed how immediately I felt the benefit. Leaving hospital was very emotional – I felt like a new woman! It really was a miracle; three weeks after the operation, I was able to walk outside for an hour. Since then, I’ve slowly got fitter and stronger, and now I can literally walk for miles. I’ve been working hard at my fitness and stamina, and am now able to walk quite long distances. In August 2004, I was able to go on my first proper holiday for years with my family. I have two young nephews, and it was wonderful to be able to keep up with them for the first time - I was even able to go canoe-ing with the older one! Then in the autumn, seven months after my transplant, I returned to work part-time. More recently, I’ve been golfing and skiing again and I’ve even been learning to rollerblade. Everyone around me is amazed and delighted with my transformation – it’s incredible!

 

However, I’m acutely aware that I’ve been very lucky. LAM is a horrible disease, and the efforts of LAM Action in supporting affected patients and doing research into the disease are very worthwhile. I’m thus hugely appreciative of your support for the charity.

 

Gill Hollis

 

SUMMARY

My challenge is to raise awareness amongst friends and family of what LAM is so that a sense of loneliness is lost and also to raise as much money as possible for LAM action so they can continue their efforts to emotionally support patients with LAM and practically continue to find a cure for this disease. What Gill Hollis hasn’t made overly clear in her account is that LAM is a disease that is in your DNA and therefore a lung transplant isn’t the Holly Grail as the disease will once again eventually proliferate on the transplanted lungs.

 

Thanks for taking the time to visit my JustGiving page.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.

So please dig deep and donate now.